IMPORTANCE There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. OBJECTIVE To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.
The increased life expectancy of perinatally HIV-infected adolescents necessitates the transition from pediatric to adult infectious disease care. Significant differences exist between pediatric and adult HIV clinic models, and adequate preparation is critical for successful transition. The expectations of youth on the cusp of this transition and their guardians have not previously been explored. Semistructured interviews were conducted with 40 perinatally infected adolescents (mean age, 17.3 years; 90% African American; 57.5% female; 57.5% in high school) currently receiving care in a pediatric infectious disease clinic in the southeast United States and 17 guardians about their expectations related to the pending transition to adult care. Interviews were transcribed and coded for emergent themes. Many adolescents had difficulty articulating expectations of their transition to an adult clinic, reporting they did not know what to expect. Others looked forward to increased responsibility and control, while some expressed concerns over leaving their current providers and having to establish new relationships. Most guardians viewed the transition to adult care as a tool to facilitate maturity. Several indicated they had not discussed transition with their child and were waiting for their child to initiate a conversation about it. Given the importance providers place on preparing youth for transition, it is surprising that many adolescents had no expectations about this impending change. This indicates a need for improved communication between providers and adolescents to enhance preparation and ultimately transition success. Additionally, guardians play an important role in the transition process and may need support to discuss this process with their child.
Individuals with perinatally-acquired HIV (PHIV) are surviving into young adulthood. Previous literature has explored the sexual behavior of those with PHIV. However, their perspectives on navigating romantic relationships are not well understood. Semi-structured interviews were conducted with 35 young adults living with PHIV recruited from two pediatric infectious disease clinics in the southeast United States. The majority of participants were African American (n=27, 77.2%), female (n=23, 65.7%), and the mean age was 20.7 (range 15-30) years. Questions focused on experiences with dating and romantic relationships as well as relationship advice for others living with HIV. Transcribed interviews were coded for emergent themes. Qualitative analyses revealed that the majority of participants have dated and struggled with their HIV status in their intimate relationships. The majority of those who disclosed their HIV status to past partners had experienced some form of rejection. However, several participants reported receiving support upon disclosure. Some individuals had never disclosed to a romantic partner, but carefully managed intimacy by delaying dating, terminating relationships, and "taking it slow." Advice fell into two broad categories: "be safe" which referred to the physical protection of self and partners, as well as emotional protection from possible rejection. The second advice category was basic encouragement which stressed the importance for young adults living with HIV to have hope that they would find a supportive partner and to be patient. The focus of education must include not only transmission risk factors, but also developing and maintaining healthy relationships in the context of a highly stigmatized illness.
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